RESUMO
There is increasing interest in the potential contribution of the gut microbiome to autism spectrum disorder (ASD). However, previous studies have been underpowered and have not been designed to address potential confounding factors in a comprehensive way. We performed a large autism stool metagenomics study (n = 247) based on participants from the Australian Autism Biobank and the Queensland Twin Adolescent Brain project. We found negligible direct associations between ASD diagnosis and the gut microbiome. Instead, our data support a model whereby ASD-related restricted interests are associated with less-diverse diet, and in turn reduced microbial taxonomic diversity and looser stool consistency. In contrast to ASD diagnosis, our dataset was well powered to detect microbiome associations with traits such as age, dietary intake, and stool consistency. Overall, microbiome differences in ASD may reflect dietary preferences that relate to diagnostic features, and we caution against claims that the microbiome has a driving role in ASD.
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Transtorno Autístico/microbiologia , Comportamento Alimentar , Microbioma Gastrointestinal , Adolescente , Fatores Etários , Transtorno Autístico/diagnóstico , Comportamento , Criança , Pré-Escolar , Fezes/microbiologia , Feminino , Humanos , Masculino , Fenótipo , Filogenia , Especificidade da EspécieRESUMO
BACKGROUND: The age at which parents or caregivers first develop concerns about their child's development has significant implications on formal diagnosis and intervention. This study aims to determine the sociocultural factors that are associated with the age and type of first concern reported by parents of autistic children among culturally and linguistically diverse (CALD) communities in Australia. We also assessed whether sociocultural factors predict autism traits measured in terms of social affect (SA), restricted and repetitive behaviours (RRB), and calibrated severity scores (CSS). METHODS: This study is a secondary data analysis of the data collected from six Autism Specific Early Learning and Care Centres (ASELCCs) as part of the Autism Co-operative Research Centre (CRC) program between 2015 and 2019. Data analysed in this study included a family history questionnaire with sociodemographic and sociocultural information, parent-reported age and type of first concern, and clinician/researcher administered Autism Diagnostic Observation Schedule - Second Edition (ADOS-2) which includes standardised domain-wise scores of social affect (SA) and restricted and repetitive behaviours (RRB) as well as calibrated severity scores (CSS), a measure of severity of autism. Primary analysis included multivariable linear regression models to examine the predictive influence of sociodemographic and sociocultural factors on the dependant variables of age of concern (AOC) and the autism traits (SA, RRB, and CSS). RESULTS: The mean AOC in the sample was 18.18 months and the most common concerns were speech/language delay, limited social interaction, and hyperactivity/behavioural changes. The multivariable linear regression models showed factors such as increase in age of child, those from a CALD background, annual family income, sibling's autism diagnosis, and developmental concerns to be significantly associated with parental AOC. Additionally, we also found that increase in child's age and CALD status to be significant predictors of autism trait (RRB) and severity measured in terms of the CSS score. Further, females (compared to males) were associated with higher difficulties with social communication and interaction skills. CONCLUSION: Understanding key factors that contribute to early identification of autism can help tailor awareness programs for parents and caregivers, whilst also informing the development of services focused on serving all CALD communities.
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Transtorno do Espectro Autista , Transtorno Autístico , Transtornos do Desenvolvimento da Linguagem , Criança , Feminino , Masculino , Humanos , Transtorno Autístico/diagnóstico , Transtorno do Espectro Autista/diagnóstico , Austrália , Comunicação , RendaRESUMO
BACKGROUND: There is growing understanding of the potential benefits of a multi-method approach to accurately capture language skills of children on the autism spectrum. Tools such as Language ENvironment Analysis (LENA) provide an efficient means of capturing and analysing early child vocalizations (CVs) and the language learning environment. While developed to capture whole-day recordings of child language in naturalistic settings, there is potential utility in capturing, but little knowledge about, primary LENA metrics-including CVs and conversational turns (CTs)-and novel metrics, such as vocalization ratios (VRs), sampled in clinical practice settings where children are often seen. Moreover, recent research indicates that the novel VR may offer a broad indicator of children's developmental level, beyond just their language abilities, a hypothesis yet to be investigated in a large sample of children for whom the LENA was designed (i.e., pre-schoolers). AIMS: To explore the extent to which primary and novel LENA metrics collected during brief one-to-one clinical interaction was a useful indicator of developmental outcomes for children on the autism spectrum. METHODS & PROCEDURES: Participants were recruited as part of an on-going research programme evaluating early intervention outcomes (n = 99; age 14-47 months). Language samples were collected at intake (T1) using the wearable LENA Digital Language Processors during a one-to-one, play-based assessment with a clinician. Direct (Mullen Scales of Early Learning-MSEL) and parent-report (Vineland Adaptive Behavior Scales-VABS) measures of verbal and non-verbal skills were also collected at intake (T1) and again at exit (T2), approximately 12 months later. OUTCOMES & RESULTS: Few correlations were observed between child measures and CVs, a primary LENA metric. The novel VR metric was associated with concurrent direct assessment (MSEL) (and to a lesser extent parent report; VABS) measures of verbal and non-verbal skills, with moderate positive correlations found between VRs and all directly assessed subscale scores. However, VRs did not uniquely contribute to the prediction of child outcomes when baseline skills were also considered. CONCLUSIONS & IMPLICATIONS: The novel VR may provide an insight into autistic children's overall development in addition to their language ability, suggesting that even when collected in a short recording format, LENA might be a useful component of a multi-method assessment approach. WHAT THIS PAPER ADDS: What is already known on the subject To accurately capture language skills of children on the autism spectrum, multi-method approaches, including natural language sampling, are recommended. Tools such as LENA provide an efficient means of capturing and analysing naturalistic child language and the language learning environment. What this paper adds to existing knowledge This study demonstrates the potential benefits, and limitations, of using LENA to augment assessment of young children on the autism spectrum. Specifically, LENA provides a complementary, and low burden, method for capturing child language samples. What are the potential or actual clinical implications of this work? Novel metrics, such as the VR, collected during brief clinical interactions might be a useful component of a multi-method assessment approach for children on the autism spectrum.
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Transtorno do Espectro Autista , Transtorno Autístico , Transtornos do Desenvolvimento da Linguagem , Transtorno do Espectro Autista/complicações , Transtorno do Espectro Autista/diagnóstico , Transtorno Autístico/diagnóstico , Criança , Linguagem Infantil , Pré-Escolar , Humanos , Lactente , Idioma , Transtornos do Desenvolvimento da Linguagem/complicações , Transtornos do Desenvolvimento da Linguagem/diagnóstico , Transtornos do Desenvolvimento da Linguagem/terapiaRESUMO
Identifying triggers for challenging behavior is difficult in some children with autism because of their limited communication abilities. Physiological indicators of stress may provide important insights. This study examined whether heart rate (HR) predicts challenging behavior in children with autism. While wearing an electrocardiograph monitor, 41 children with autism aged 2- to 4-years participated in tasks designed to induce low-level stress (e.g. waiting for a snack). Coders identified 106 time periods during which challenging behaviors occurred and also coded 106 randomly selected time samples that did not include challenging behaviors. Thirteen (32%) participants exhibited challenging behaviors and were included in the study. Baseline-corrected HR was computed for each behavior/time sample. On average, children with autism showed a 22 ± 16% HR increase from baseline 58 ± 22 seconds before the onset of a challenging behavior episode. Peak HR change had moderate predictive utility (area under the curve = .72, p < .001). The increase in HR before challenging behaviors was similar for children of different characteristics (age, autism severity, expressive language ability, overall developmental ability). Results highlight the promise of using physiological stress to predict challenging behavior in preschoolers with autism; although, they need to be replicated in larger samples. Given recent advances in wearable biosensing, it may be useful to incorporate HR monitoring in autism intervention. Lay summary In children with autism, changes in heart rate (HR) may help us predict when challenging behavior is about to occur - but this hypothesis has not been well studied. In this study, HR increase moderately predicted challenging behavior in preschoolers with autism. Given recent advances in wearable sensors, it may be useful to incorporate HR monitoring in autism intervention.
Assuntos
Transtorno Autístico/psicologia , Frequência Cardíaca , Estresse Psicológico/fisiopatologia , Transtorno Autístico/fisiopatologia , Criança , Pré-Escolar , Feminino , Humanos , MasculinoRESUMO
BACKGROUND: The phenotypic and genetic heterogeneity of autism spectrum disorder (ASD) presents considerable challenges in understanding etiological pathways, selecting effective therapies, providing genetic counselling, and predicting clinical outcomes. With advances in genetic and biological research alongside rapid-pace technological innovations, there is an increasing imperative to access large, representative, and diverse cohorts to advance knowledge of ASD. To date, there has not been any single collective effort towards a similar resource in Australia, which has its own unique ethnic and cultural diversity. The Australian Autism Biobank was initiated by the Cooperative Research Centre for Living with Autism (Autism CRC) to establish a large-scale repository of biological samples and detailed clinical information about children diagnosed with ASD to facilitate future discovery research. METHODS: The primary group of participants were children with a confirmed diagnosis of ASD, aged between 2 and 17 years, recruited through four sites in Australia. No exclusion criteria regarding language level, cognitive ability, or comorbid conditions were applied to ensure a representative cohort was recruited. Both biological parents and siblings were invited to participate, along with children without a diagnosis of ASD, and children who had been queried for an ASD diagnosis but did not meet diagnostic criteria. All children completed cognitive assessments, with probands and parents completing additional assessments measuring ASD symptomatology. Parents completed questionnaires about their child's medical history and early development. Physical measurements and biological samples (blood, stool, urine, and hair) were collected from children, and physical measurements and blood samples were collected from parents. Samples were sent to a central processing site and placed into long-term storage. DISCUSSION: The establishment of this biobank is a valuable international resource incorporating detailed clinical and biological information that will help accelerate the pace of ASD discovery research. Recruitment into this study has also supported the feasibility of large-scale biological sample collection in children diagnosed with ASD with comprehensive phenotyping across a wide range of ages, intellectual abilities, and levels of adaptive functioning. This biological and clinical resource will be open to data access requests from national and international researchers to support future discovery research that will benefit the autistic community.
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Transtorno do Espectro Autista/epidemiologia , Bancos de Espécimes Biológicos , Austrália , Transtorno do Espectro Autista/genética , Pesquisa Biomédica , Coleta de Amostras Sanguíneas , Criança , Pré-Escolar , Protocolos Clínicos , Fezes , Cabelo , Humanos , Fenótipo , Testes Psicológicos , Inquéritos e Questionários , UrináliseRESUMO
BACKGROUND: Encouraging early child development and the early identification of developmental difficulties is a priority. The Ministry of Health in the Australian State of New South Wales (NSW), has recommended a program of developmental surveillance using validated screening questionnaires, namely, the Parents' Evaluation of Development Status (PEDS) and Ages and Stages Questionnaire (ASQs), however, the use of these tools has remained sub-optimal. A longitudinal prospective birth cohort "Watch Me grow" study was carried out in the South Western Sydney (SW) region of NSW to ascertain the uptake as well as the strategies and the resources required to maximise engagement in the surveillance program. This paper reports on a qualitative component of the study examining the attitudes, enablers and barriers to the current developmental surveillance practices, with reference to screening tools, amongst health professionals. METHODS: Qualitative data from 37 primary health care providers in a region of relative disadvantage in Sydney was analysed. RESULTS: The major themes that emerged from the data were the "difficulties/problems" and "positives/benefits" of surveillance in general, and "specificity" of the tools which were employed. Barriers of time, tool awareness, knowledge and access of referral pathways, and services were important for the physician providers, while the choice of screening tools and access to these tools in other languages were raised as important issues by Child and Family Health Nurses (CFHN). The use of these tools by health professionals was also influenced by what the professionals perceived as the parents' understanding of their child's development. While the PEDS and ASQs was utilised by CFHNs, both General Practitioners (GPs) and paediatricians commented that they lacked awareness of developmental screening tools and highlighted further training needs. CONCLUSIONS: The results highlight the practical challenges to, and limited knowledge and uptake of, the use of recommended screening tools as part of developmental surveillance. There is a need for further research regarding the most effective integrated models of care which will allow for a better collaboration between parents and service providers and improve information sharing between different professionals such as CFHNs GPs, Practices nurses and Paediatricians involved in screening and surveillance programs.
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Atitude do Pessoal de Saúde , Deficiências do Desenvolvimento/diagnóstico , Programas de Rastreamento , Desenvolvimento Infantil , Pré-Escolar , Feminino , Pesquisas sobre Atenção à Saúde , Humanos , Lactente , Masculino , New South Wales , Pais , Inquéritos e QuestionáriosRESUMO
AIM: To examine socio-demographic factors associated with maternal help-seeking for child developmental concerns in a longitudinal birth cohort study. An understanding of these factors is critical to improving uptake of services to maximise early identification and intervention for developmental concerns. METHODS: A birth cohort was recruited from the post-natal wards of two teaching hospitals and through community nurses in South Western Sydney, Australia, between November 2011 and April 2013. Of the 4047 mothers approached, 2025 consented to participate (response rate = 50%). Socio-demographic and service use information was collected after the child's birth and when the child was 18 months of age. Sources of help were divided into three categories (formal health services, other formal services and informal supports) and compound variables were created by summing the number of different sources identified by mothers. RESULTS: Significantly more sources of help were intended to be used and/or actually accessed by mothers born in Australia, whose primary language was English, with higher levels of education and annual household income, and among mothers of first-born children. CONCLUSIONS: Developmental concerns are known to increase with increased psychosocial adversity. Our findings of reduced intent to access and use of services by socio-economically disadvantaged families and those from culturally and linguistically diverse backgrounds suggests that an inverse care effect is in operation whereby those children with the greatest health needs may have the least access to services. Possible explanations for this, and recommendations for improving service accessibility for these populations through targeted and culturally appropriate services, are discussed.
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Desenvolvimento Infantil , Demografia , Comportamento de Busca de Ajuda , Mães/psicologia , Austrália , Criança , Serviços de Saúde da Criança , Diagnóstico Precoce , Feminino , Hospitais de Ensino , Humanos , Estudos Longitudinais , Masculino , Inquéritos e QuestionáriosRESUMO
BACKGROUND: Regular health visits for parents with young children provide an opportunity for developmental surveillance and anticipatory guidance regarding common childhood problems and help to achieve optimal developmental progress prior to school entry. However, there are few published reports from Australian culturally and linguistically diverse (CALD) communities exploring parents' experiences for accessing child health surveillance programs. This paper aims to describe and explain parental experiences for accessing developmental surveillance and anticipatory guidance for children. METHODS: Qualitative data was obtained from 6 focus groups (33 parents) and seven in-depth interviews of CALD parents recruited from an area of relative disadvantage in Sydney. Thematic analysis of data was conducted using an ecological framework. RESULTS: An overarching theme of "awareness-beliefs-choices" was found to explain parents' experiences of accessing primary health care services for children. "Awareness" situated within the meso-and macro-systems explained parents knowledge of where and what primary health services were available to access for their children. Opportunities for families to obtain this information existed at the time of birth in Australian hospitals, but for newly arrived immigrants with young children, community linkages with family and friends, and general practitioner (GPs) were most important. "Beliefs" situated within the microsystems included parents' understanding of their children's development, in particular what they considered to be "normal" or "abnormal". Parental "choices", situated within meso-systems and chronosystems, related to their choices of service providers, which were based on the proximity, continuity, purpose of visit, language spoken by the provider and past experience of a service. CONCLUSIONS: CALD parents have diverse experiences with primary health care providers which are influenced by their awareness of available services in the context of their duration of stay in Australia. The role of the general practitioner, with language concordance, suggests the importance of diversity within the primary care health workforce in this region. There is a need for ongoing cultural competence training of health professionals and provisions need to be made to support frequent use of interpreters at general practices in Australia.
Assuntos
Desenvolvimento Infantil , Serviços de Saúde da Criança/normas , Diversidade Cultural , Acessibilidade aos Serviços de Saúde/normas , Criança , Serviços de Saúde Comunitária/organização & administração , Competência Cultural , Emigrantes e Imigrantes/estatística & dados numéricos , Feminino , Grupos Focais , Pessoal de Saúde/estatística & dados numéricos , Humanos , Idioma , New South Wales , Pais , Atenção Primária à Saúde/organização & administração , Fatores SocioeconômicosRESUMO
OBJECTIVE: The aim of this study was to identify the prevalence of parent-reported autism spectrum disorder diagnosis in Australia, and examine the developmental profile of children with autism spectrum disorder compared to their peers. DESIGN/SETTING: Secondary analyses were undertaken on data from the Longitudinal Study of Australian Children. PARTICIPANTS: Children were recruited at kindergarten (K cohort) and birth (B cohort), and subsequently completed two-yearly 'waves' of assessments. MAIN OUTCOMES: Autism spectrum disorder diagnostic status was ascertained at Wave 4 along with age of diagnosis by parent report. Standardised tools were used to assess children's quality of life, behaviour, receptive vocabulary and non-verbal intelligence. RESULTS: Prevalence of autism spectrum disorder was 2.5% (95% confidence interval = [2.0, 3.0]) in the B cohort compared to 1.5% (95% confidence interval = [1.2, 2.0]) in the K cohort. In both cohorts, children with autism spectrum disorder had poorer mean quality of life, emotional-behavioural functioning and receptive vocabulary compared with non-autism spectrum disorder peers, and a higher proportion of children with autism spectrum disorder had problems in these areas. However, between 6% and 9% of children with moderate to severe autism spectrum disorder and 12-20% with mild autism spectrum disorder were not reported to have problems with social interaction. CONCLUSION: The prevalence of a parent-reported diagnosis of autism spectrum disorder before age 7 in Australia was higher in the B cohort. Data from future Longitudinal Study of Australian Children waves will clarify whether autism spectrum disorder has been diagnosed earlier in the B cohort or if there is a continued increase in prevalence. Future waves will also provide crucial information about the types and severity of problems experienced during the primary and secondary school years which will assist service planning.
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Transtorno do Espectro Autista/epidemiologia , Inteligência , Relações Interpessoais , Austrália/epidemiologia , Criança , Feminino , Humanos , Estudos Longitudinais , Masculino , Prevalência , Escalas de Graduação Psiquiátrica , Qualidade de Vida , Índice de Gravidade de DoençaRESUMO
BACKGROUND: The "Watch Me Grow" (WMG) study examines the current developmental surveillance system in South West Sydney. This paper describes the establishment of the study birth cohort, including the recruitment processes, representativeness, follow-up and participants' baseline risk for future developmental risk. METHODS: Newborn infants and their parents were recruited from two public hospital postnatal wards and through child health nurses during the years 2011-2013. Data was obtained through a detailed participant questionnaire and linked with the participant's electronic medical record (EMR). Representativeness was determined by Chi-square analyses of the available clinical, psychosocial and sociodemographic EMR data, comparing the WMG participants to eligible non-participants. Reasons for non-participation were also elicited. Participant characteristics were examined in six, 12, and 18-month follow-ups. RESULTS: The number of infants recruited totalled 2,025, with 50 % of those approached agreeing to participate. Reasons for parents not participating included: lack of interest, being too busy, having plans to relocate, language barriers, participation in other research projects, and privacy concerns. The WMG cohort was broadly representative of the culturally diverse and socially disadvantaged local population from which it was sampled. Of the original 2025 participants enrolled at birth, participants with PEDS outcome data available at follow-up were: 792 (39 %) at six months, 649 (32 %) at 12 months, and 565 (28 %) at 18 months. Participants with greater psychosocial risk were less likely to have follow-up outcome data. Almost 40 % of infants in the baseline cohort were exposed to at least two risk factors known to be associated with developmental risk. CONCLUSIONS: The WMG study birth cohort is a valuable resource for health services due to the inclusion of participants from vulnerable populations, despite there being challenges in being able to actively follow-up this population.
Assuntos
Deficiências do Desenvolvimento/diagnóstico , Seleção de Pacientes , Recusa de Participação/estatística & dados numéricos , Deficiências do Desenvolvimento/etiologia , Registros Eletrônicos de Saúde , Feminino , Seguimentos , Humanos , Lactente , Recém-Nascido , Masculino , New South Wales , Fatores de Risco , Viés de Seleção , Inquéritos e QuestionáriosRESUMO
BACKGROUND: There is variability in the language of children with autism, even those who are high functioning. However, little is known about how they process language structures in real time, including how they handle potential ambiguity, and whether they follow referential constraints. Previous research with older autism spectrum disorder (ASD) participants has shown that these individuals can use context to access rapidly the meaning of ambiguous words. The severity of autism has also been shown to influence the speed in which children with ASD access lexical information. AIMS: To understand more about how children with ASD process language in real time (i.e., as it unfolds). The focus was the integration of information and use of referential constraints to identify a referent named in a sentence. METHODS & PROCEDURES: We used an eye-tracking task to compare performance between young, high-functioning children with autism (HFA) and children with typical development (TD). A large sample of 5-9-year-old children (mean age = 6;8 years), 48 with HFA and 56 with TD participated; all were attending mainstream schools. For each item participants were shown a display of four images that differed in two dimensions. Each sentence contained an adjective and noun that restricted the choice from four to two (the target and competitor), followed by a prepositional phrase (e.g., the blue square with dots); this added modifying information to provide a unique description of the target. We calculated looking time at the target, the competitor and the two distractors for each 200 ms time interval as children processed the sentence and looked at the display. Generalized estimating equations were used to carry out repeated-measures analyses on the proportion of looking time to target and competitor and time to fixate to target. OUTCOMES & RESULTS: Children in both groups (HFA and TD) looked at the target and competitor more than at the distractors following the adjective and noun and following the modifying information in the prepositional phrase more at the target. However, the HFA group was significantly slower in both phases and looked proportionally less at the target. Across the sample, IQ and language did not affect the results; however, age and attention had an impact. The older children showed an advantage in processing the information as did the children with higher attention scores. CONCLUSIONS & IMPLICATIONS: The HFA group took longer than the TD group to integrate the disambiguating information provided in the course of processing a sentence and integrate it with the visual information, indicating that for the ASD group incremental processing was not as advanced as for children with ASD, and they were less sensitive to referential conventions. Training for young children with ASD on the use of referential conventions and available contextual clues may be of benefit to them in understanding the language they hear.
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Transtorno do Espectro Autista/diagnóstico , Compreensão , Linguística , Leitura , Semântica , Aprendizagem Verbal , Transtorno do Espectro Autista/psicologia , Criança , Pré-Escolar , Formação de Conceito , Feminino , Humanos , Inteligência , Masculino , Tempo de Reação , Valores de Referência , Percepção da FalaRESUMO
OBJECTIVES: To investigate the frequency and age at diagnosis of autism spectrum disorder (ASD) in children aged under 7 years living in Australia. DESIGN AND PARTICIPANTS: Analysis of de-identified data on 15 074 children aged under 7 years registered with the Helping Children with Autism Package (HCWAP; a program that provides funding for access to early intervention and support services throughout Australia) between 1 July 2010 and 30 June 2012. MAIN OUTCOME MEASURES: Age at diagnosis of ASD as confirmed by a paediatrician, psychiatrist and/or multidisciplinary team assessment. RESULTS: The average age at diagnosis of ASD in children registered with the HCWAP is currently 49 months, with the most frequently reported age being 71 months. Differences were evident in age at diagnosis across states, with children in Western Australia and New South Wales being diagnosed at a younger age. Across Australia, 0.74% of the population of children aged under 7 years are currently diagnosed with ASD and registered with the HCWAP. A higher proportion of children were registered with the HCWAP in Victoria compared with other states. There was no difference in age at diagnosis between Indigenous and non-Indigenous Australians, but children from a culturally and linguistically diverse background were diagnosed 5 months earlier than other children. CONCLUSIONS: There may be a substantial gap between the age at which a reliable and accurate diagnosis of ASD is possible and the average age that children are currently diagnosed. The frequency of ASD diagnoses in Australia has increased substantially from previously published estimates.
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Transtornos Globais do Desenvolvimento Infantil/diagnóstico , Transtornos Globais do Desenvolvimento Infantil/epidemiologia , Distribuição por Idade , Idade de Início , Austrália/epidemiologia , Transtorno Autístico/diagnóstico , Transtorno Autístico/epidemiologia , Criança , Transtornos Globais do Desenvolvimento Infantil/terapia , Pré-Escolar , Diagnóstico Diferencial , Feminino , Humanos , Incidência , Lactente , Masculino , Fatores de RiscoRESUMO
We hypothesized that difficulty in understanding the goals of others' actions in autism spectrum disorder (ASD) might be linked to a diminished attention and responsivity to relevant social cues. Using an eye-tracking paradigm, we investigated how 24 children with ASD and 24 matched children without ASD responded to the observation of uncompleted actions without a clear target (neutral condition) versus a condition in which the actor's gaze direction indicated the target of the actions (head-turning condition). Children without ASD significantly increased their attention to the actor's face and to the action's target in the head-turning condition compared to the neutral condition, while this was not the case in the ASD group. Overall, our findings suggest a diminished monitoring and responsivity to social cues signalling goal-directedness, which might impact on the ability to understand other's action goals in young children with ASD.
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Atenção/fisiologia , Transtornos Globais do Desenvolvimento Infantil/fisiopatologia , Fixação Ocular/fisiologia , Objetivos , Adulto , Análise de Variância , Estudos de Casos e Controles , Sinais (Psicologia) , Feminino , Humanos , Masculino , Pessoa de Meia-Idade , Movimento , Estimulação Luminosa , Características de Residência , Inquéritos e QuestionáriosRESUMO
BACKGROUND: Universal developmental surveillance programs aimed at early identification and targeted early intervention significantly improve short- and long-term outcomes in children at risk of developmental disorders. However, a significant challenge remains in providing sufficiently rigorous research and robust evidence to inform policy and service delivery. This paper describes the methods of the 'Watch Me Grow' study that aims to maximise accurate early detection of children with developmental disorders through a partnership formed between policy makers, service providers and researchers. METHODS/DESIGN: A mixed methods study design was developed consisting of: (1) a qualitative study of parents and health service providers to investigate barriers and enablers of developmental surveillance; (2) recruitment of a birth cohort and their longitudinal follow-up to 18 months of age to: a) assess risk factors for not accessing existing developmental surveillance programs and b) estimate the prevalence of children identified with developmental risk; (3) comparison of surveillance outcomes with a reference standard at 18 months of age to assess the diagnostic test accuracy of existing and alternative developmental surveillance tools; and (4) comparison of developmental surveillance models to inform policy recommendations. Data linkage will be used to determine the uptake and representativeness of the study participant group versus non-participants. DISCUSSION: The Watch Me Grow study is expected to provide a collaborative opportunity to enhance universal developmental surveillance for early accurate identification of developmental risk. This will also provide quality evidence about identification of developmental risk and access to services to be embedded in existing practice with linkages to policy development.
Assuntos
Desenvolvimento Infantil , Deficiências do Desenvolvimento/prevenção & controle , Austrália , Estudos de Coortes , Deficiências do Desenvolvimento/diagnóstico , Humanos , Lactente , Recém-Nascido , Estudos Longitudinais , Fatores de RiscoRESUMO
Researchers have begun to explore the characteristics and risk factors for autistic burnout, but assessment tools are lacking. Our study comprehensively examined and compared the psychometric properties of the unpublished 27-item AASPIRE Autistic Burnout Measure (ABM), and personal and work scales of the Copenhagen Burnout Inventory (CBI) to evaluate their efficacy as screening measures for autistic burnout, with a group of 238 autistic adults. Exploratory factor analyses (EFA) revealed a 4-factor structure for the ABM and a 2-factor structure for the CBI personal scale (CBI-P). Factorial validity and dimensionality were examined with four exploratory models which indicated a unidimensional structure for the ABM with an overarching 'Autistic Burnout' construct, and multidimensional CBI-P structure comprising two subscales and overarching 'Personal Burnout' construct. Other reliability and validity indicators included Spearman correlations, analysis of variance, receiver operating characteristics, sensitivity, specificity, and intra-class correlations (ICC). The ABM and CBI-P were strongly correlated with depression, anxiety, stress, and fatigue. Unexpectedly, correlations between the burnout measures and camouflaging, and wellbeing measures were moderate. Potential overlap between burnout and depression and fatigue was examined through EFA, which supported convergent validity of the ABM and depression measure, while correlations and ICC analyses revealed mixed results. We concluded that the ABM and the CBI-P Emotional Exhaustion subscale were valid preliminary screening tools for autistic burnout. Testing with larger and more diverse autistic samples is required to further examine the psychometric properties of the ABM, and to understand the relationships between autistic burnout and depression, and masking.
Assuntos
Transtorno Autístico , Esgotamento Psicológico , Psicometria , Humanos , Masculino , Feminino , Adulto , Reprodutibilidade dos Testes , Transtorno Autístico/psicologia , Pessoa de Meia-Idade , Inquéritos e Questionários , Adulto Jovem , Depressão/diagnóstico , Depressão/psicologia , Análise Fatorial , Esgotamento Profissional/psicologia , Esgotamento Profissional/diagnósticoRESUMO
Engaging in meaningful activities (e.g., leisure, spiritual, fitness) significantly affects caregivers' quality of life (QoL), yet the determinants of participation in caregivers of Autistic children remain largely unknown. The current study examined child and caregiver correlates of primary caregiver participation in meaningful activities. One hundred and six primary caregivers of Autistic children (7-12 years) were recruited from three unique cohorts of Autistic children in this cross-sectional study. Primary caregivers completed online questionnaires measuring occupational gaps (i.e., desired activities caregivers are not participating in), QoL, parenting stress, perceived family outcomes, and social support. In addition to undertaking direct assessments of children's cognition and language, primary caregivers also reported on their child's adaptive behavior, social-emotional skills, and participation. Caregivers reporting fewer occupational gaps (i.e., ≤2 desired activities) were more likely to have Autistic children with no co-occurring conditions, who were older, and with better adaptive behaviors, social-emotional skills, and more frequent home and school participation, compared to caregivers reporting many gaps (i.e., ≥3 desired activities). Caregivers with fewer occupational gaps also reported improved QoL, parenting stress, social support, perceived community inclusiveness, and family outcomes. Logistic regression analysis identified child age, child adaptive behavior, social-emotional skills, home participation, and the caregivers' perceived family outcomes and QoL as important predictors of their occupational gaps. The findings demonstrate that caregiver participation in desired activities was associated with increased functional ability and independence of the child, as well as their perceived capacity to meet their child's needs. Supporting parents' sense of efficacy in meeting their children's needs and building their skills and knowledge will serve to improve both caregiver and child outcomes.
Assuntos
Cuidadores , Qualidade de Vida , Humanos , Criança , Masculino , Feminino , Cuidadores/psicologia , Estudos Transversais , Qualidade de Vida/psicologia , Transtorno Autístico/psicologia , Apoio Social , Inquéritos e Questionários , Adulto , Família/psicologia , Adaptação Psicológica , Poder Familiar/psicologia , Habilidades SociaisRESUMO
Parents of Autistic children often modify their participation in leisure, social, and employment activities to meet the caregiving needs of their child. However, few studies have examined the impact this has on caregiver quality of life (QoL). The aim in the current study was to examine the role of participation in a range of activities on QoL amongst primary and secondary caregivers of school-aged Autistic children. Eighty-eight primary (93% mothers) and 63 secondary (91% fathers) caregivers of Autistic children (aged 7- to 12-years) participated in this cross-sectional study, with time pressure, participation, social support, parenting stress, and QoL measured via an online questionnaire. Compared to secondary caregivers, primary caregivers reported fewer employment hours, increased time pressure, less participation in desired activities, and higher perceived responsibility of domestic and child-rearing tasks. Similar levels of leisure frequency, parenting stress, and QoL were identified by both caregivers. Hierarchical regression revealed caregiver participation as important for QoL in both primary and secondary caregivers. However, when measures of caregiver well-being were added to the model, the unique contribution of participation to QoL was reduced, particularly for secondary caregivers. Overall, the findings demonstrate that despite differences in caregiver roles and responsibilities, participation in meaningful activities was important for QoL in all caregivers.
Assuntos
Transtorno do Espectro Autista , Transtorno Autístico , Feminino , Humanos , Criança , Qualidade de Vida , Cuidadores , Estudos Transversais , Atividades de LazerRESUMO
BACKGROUND: Individuals on the autism spectrum commonly have differences from non-autistic people in expressing their emotions using communicative behaviors, such as facial expressions. However, it is not yet clear if this reduced expressivity stems from reduced physiological reactivity in emotional contexts or if individuals react internally, but do not show these reactions externally to others. We hypothesized that autism is characterized by a discordance between in-the-moment internal psychophysiological arousal and external communicative expressions of emotion. METHODS: Forty-one children on the autism spectrum and 39 non-autistic, typically developing (TD) children of two age groups (2-4 and 8-12 years) participated in a low-level stress task whilst wearing a wireless electrocardiogram. Children's negative emotional expressions (facial, vocal, bodily) were coded following standardized protocols. Alexithymia traits were assessed using the Children's Alexithymia Measure with school-aged children only. Data analyses involved ANOVAs, correlations, and sensitivity analyses. RESULTS: There were no group differences in physiological arousal (heart rate) or in communicative expressions of stress to the stress task. For TD preschoolers, physiological arousal during the stress task was associated with vocal expressions and for TD school-aged children, they were associated with facial and bodily expressions. By contrast, for children on the autism spectrum, physiological arousal during the stress tasks was not associated with communicative expressions across age groups. CONCLUSIONS: Our findings suggest that children on the autism spectrum might experience emotional disconcordance, in that their physiological arousal does not align with their communicative expressions. Therefore, the internally experienced stress of children on the autism spectrum may be inadvertently missed by teachers and caregivers and, consequently, learning opportunities for teaching emotional communication and regulation may be also missed. Our results support the use of wearable biosensors to facilitate such interventions in children on the autism spectrum.